Archive for February 2014

I’ve had my eye on the Gelli Arts Gel Printing Plates for a while, I’ve seen some lovely backgrounds created with them and lots of inspirational videos but I really didn’t want to spend £20-£30 on something that:

a) I might not like and b) I might use it once then never again!

I know I could’ve easily made a temporary gelatine one to test first to see if I liked them, but to be honest to me it seemed like too much hard work and I’d rather stick pins in my eyes so I never bothered.

Instead I started looking on ebay to see if I could come up with something similar to work with at a fraction of the price and I think I found it!

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Taking sides: Some of the demonstrators at Newtown, Powys. [Image: Mike Sivier] Were you one of the many, many people – both able-bodied and with disabilities – who gathered outside Atos assessment centres yesterday to demand an end to the system that continues to cause the deaths of thousands of innocent people every day?

I was.

I attended one of the 144 locations used by Atos to carry out the discredited work capability assessments – in Newtown, Powys – where I was just another face in the crowd that had gathered to remind the public of the atrocity being carried out with their tax money.

The Newtown campaign was undoubtedly small in comparison to others around the country, with a maximum of 15 protesters at its height, but the public response was excellent. The assessment centre is next to a major traffic junction, meaning there were plenty of opportunities to…

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Recently I put in a ‘wish’ on the website ‘Crowdwish’ saying that ‘I wish people would try to understand and empathise with those who have invisible illnesses’ and I was delighted on Sunday to learn it had been actioned.

I’d written a little about how I felt along with the wish and I’ll repeat it here.

People with Myalgic Encephalomyelitis (ME) and other invisible illnesses are repeatedly judged and dismissed as not having a real disability. The media and some in the medical profession are so dismissive of this serious condition and even worse some cause direct harm to patients by enforcing dangerous and harmful treatments. The media influences public perception of ME and this in turn leaves patients with no family support or help from their GPs.

If only more funds were made available by the medical establishment towards biomedical research then it could be proven that it is an illness that affects the neuro/immune/endocrine/cardiac systems and has a devastating effect on millions of sufferers worldwide. People are left with no adequate treatment and many are bedbound, tube fed and unable to function independently. With proper research these people could regain their lives, their health and their dignity.

Patients have set up a charity since 2011 and are raising funds. Its called Let’s Do It For ME and have so far raised £279,000 towards research by Invest in ME. Their website is here: http://ldifme.org

I was really happy when Crowdwish got in touch and even more so after reading what they’d written back.

“Today’s Crowdwish was ‘I wish people would try to understand and empathise with those who have invisible illnesses’

Invisible illnesses are those defined as having little or no external manifestation – sufferers may appear ‘fine’, but in reality might be afflicted with any one of a number of conditions, all of which severely impede their ability to live a straightforward ‘normal’ life. Typically neurological in nature, these illnesses include, but are not limited to, conditions such as :

ME

Fibromyalgia

Chronic fatigue syndrome

Chronic pain disorder

Chronic dizziness

Mental illness

Cognitive dysfunctions

Severe Myalgic Encephalomyalitis

Many of these issues come grouped together – for example ME sufferers will often also experience pain, digestive or neurological impairments in addition to their ‘core’ illness.

Because they have no outward manifestation, it is extremely easy for sufferers to be considered essentially well enough to function; as a consequence it can be very difficult to have the condition taken seriously, receive appropriate care or disability benefits and have the world understand that these kinds of illnesses are just as debilitating as something with a clear external appearance, such a broken arm or leg.

Often they can in fact be more challenging – for the individuals concerned these conditions are incredibly oppressive and frequently imprisoning. Energy is an extremely finite resource that must be carefully measured and judiciously expended. Conserving the amount of stamina required for ‘simple’ activities like shopping or meeting a friend for a drink can take days. They may struggle to work, to attend school or college, socialise with others; even a short walk can become an enormous effort.

This is a condition that robs people of the ability to function in the way that the rest of us take for granted, steals energy and self-belief but is frequently misunderstood, ignored or just regarded by many as ‘tiredness’.

The individual who made this wish has herself suffered with ME for a number of years, yet has worked incredibly hard to raise awareness of invisible illnesses through her honest writing highlighting the many injustices both social and political that accompany these conditions.

We’re sending her a gift privately to hopefully make a tiny contribution towards elevating the quality of her day-to-day life.

Imagine my surprise when this morning a lovely item arrived in the post. It’s a print out of a beautiful starry sky saying “Hey Carole Carrick, Always remember this” along with an Oscar Wilde quote:

“We are all in the gutter, but some of us are looking at the stars.”

It’s perfect for framing and hanging on my bedroom wall but I’m going to incorporate it into my fabric journal that I’ve begun to fill at last along with the ‘Documented Life Project’. It’ll go perfectly in there. I’ll let you see it when it’s completed but here is the cover for now. 🙂

Now these folk at Crowdwish are seriously thoughtful indeed. There’s one thing talking about helping people to achieve their wishes and dreams but another to actively create joy and hope in someone’s life and they have certainly done that for me with all the above. There is a wish fulfilled every day from large to small. It’s a really wonderful idea and something that lightens my heart knowing that there’s people out there with such good intentions and open hearts.

Thank you again Crowdwish…you couldn’t have made me any happier!

If you’d like more information on Crowdwish or just want to join in go here.

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Is ME fatal? A different perspective.

“This brings to mind another illness where sufferers nearly always die of secondary conditions: AIDS. People with AIDS generally die of secondary infections which their bodies are unable to fight off due to the effect of the AIDS virus on their system. Yet everyone knows AIDS is a terminal condition. We don’t deny its severity or its life-ending effect just because the final straw is nearly always a secondary condition. The same should be understood about ME.”

I’ve just seen this outside Devizes Job Centre: A man standing crying and and so distressed he wet himself. He was saying ” they won’t help me! They won’t let me have any money! They say I’ve used all my foodbank vouchers”. He proceeded to collapse to the ground and curl up in a ball, his arms around his dog. Two passers by were supporting him. One went to buy him some food & the other had gone to get him a blanket. Several people averted their eyes and hurried past! I couldn’t do any more than was already being done for him, though I would have liked to help. I cried my eyes out for him and cried in anger at the vile, despicable people who are sitting in the Job Centre a few feet away doing absolutely nothing!!! I cannot believe what is happening in this…

has been reverted by ICD-11 Revision to read, “Bodily distress disorders”.

The category, 5C70 Psychological and behavioural factors associated with disorders or diseases classified elsewhere [F54 in ICD-10], which had been, and remains listed as an Exclusion to class “Bodily distress disorders”, is now coded towards the end of the list of Chapter 5 Mental and behavioural disorders categories, rather than listed as a hierarchical child category under:

The parody twitter account @UKJCP is back after the bungled attempt by the DWP to have them banned from twitter. The spoof twitter feed, which has attracted a wide following, had been suspended from twitter after complaints from the DWP.

The DWP appear to have claimed that they wished to use the username @UKJCP and therefore twitter should close the satirical account. A quick search shows that the DWP do not use these initials to describe the Jobcentre network yet they still attempted to claim ownership of them with the aim of censoring social media.

The DWP also claimed that some of @UKJCP’s tweets were ‘rude’ and potentially libelled the UK Government, politicians and the heads of large private sector organisations. This is a…

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Carole

I am an eclectic contradiction.
A shy yet open woman.
A free spirit following the rules.
A homebody with wanderlust.
A realist who believes in all things magical.
A down to earth avid dreamer.
A town-born country girl.
A child with an old soul.

This blog is my story about a life forever changed by chronic illness. I hope you'll laugh and cry with me as I try to make sense of it all. Oh, and nothing I say should ever be construed as offering medical or legal advice.